here we go again…

A few months ago, I heard about this really great place that I could bring Evie to work on communication.  I had a totally great conversation on the phone with the therapist about my feelings about ABA.  They do not have a BCBA on staff by design.

Awesome.

We talked about eye contact and how it is not something we should be trying to force Autistic people to do.

Awesome.

We talked about a lot of things and I was so very excited to bring Evie to this place.  So very, very excited to get help in teaching Evie to communicate more effectively.

And then we got there.  We were not working with the same therapist that I spoke with on the phone.

Okay.

And then I went in the observation room and behind the observation glass.

It started off great!  A little bit of Floortime-esque play to get to know each other.  The therapist caught on that Evie likes physical play really quickly.  And they started to make a connection.  I could see it…Evie was signing “more” which she doesn’t usually do unless she knows someone.  Evie was smiling.

I was smiling.

And then, the therapist started to draw the blueberry up to her face so that Evie would “gaze at her face.”

And my heart sank.

Because no.

No, no, no.

This is the exact opposite of what we signed up for.

This is not okay.

The therapist listed off her credentials.  And then started talking about how important joint attention is.  Apparently her definition and my definition of joint attention are not the same.

My definition of joint attention is that we are both paying attention to the same thing at the same time.

Her definition included the criteria that she and Evie are paying attention to the same thing at the same time.  And that Evie references her face (eye gaze).

She claimed that Evie needed to be able to get information from faces in order to develop more sophisticated communication.

I become incredibly inarticulate when I get upset and I was REALLY upset.

If this is true, how do blind people learn to communicate effectively?

She wasn’t really interested in hearing my feelings about it.  Because this is “proven.”

Proven to do what?  Please show me one place where science proves that a person will not acquire the ability to communicate if a person does not look at faces to get information.

I don’t have a gazillion Autism letters after my name.  I have Evie though.  And what Kassiane describes as “helper people” don’t always understand.  Helper people can do more harm than good…no matter their intentions.

There were some posters in the waiting room which tell me everything I want to know about this organization’s level of understanding and respect for Autistic people.  I will save that discussion for another post.

I cried angry tears and sat in the parking lot for a few minutes.  I Facebook messaged with Alyssa from Yes, that too for a couple of minutes until I felt like I could drive.   Thank you, Alyssa for talking to me during those awful moments.  Especially since I know hearing about this kind of stuff must not be easy for you as an Autistic person.

***editing to add a link to this post from Alyssa on how she would have failed Kindie would there have been this kind of thing***

When I got home, I went straight to the experts.  Autistic people.  Evie’s people.  MY people.  My friends.  People that I love and trust in a way that I cannot even begin to express.

And I was comforted by the virtual embrace of their words.  I was comforted to hear that, no.  No, I was not being over the top.  Most of them do not read faces to get information.

I was once again caught by the loving safety net that these people spread each time I feel like I am falling, falling, falling.  Falling alone.

Thank you to the beautiful people that helped me yesterday–Alyssa, Kassiane, Zach, Deanne, Kelly, Savannah, Cynthia, Cara, Brenda, Michelle, Emily & Michael.  And to the others that are always there with the right words.  Everyone should be so lucky to have friends like you.

8 thoughts on “here we go again…


  1. That kind of thing they do there? That's why I'd have failed in special needs classes. In gen ed kindergarten, they're too busy keeping people from pulling hair and fighting on the playground to notice that a girl who can speak and doesn't cause much trouble also doesn't look at them much. In special ed? They'd push for the things I can't do, and not let me near what I can do until I did what I Just. Can't. Do.

  2. Yeah, I share your definition of joint attention. And it’s a wonderful thing.

    When another person is paying attention to a subject or object of attention…and I’m paying attention to appearing like I’m paying attention correctly…that is not joint attention, in my book. That is two people paying attention to different things. That seriously compromises my ability to pay attention and understand the subject at hand.

  3. Beyond the basic expressions of happy, sad, confused, angry, surprised faces are meaningless to me. Same with all but the most obvious body language. I could look at you all day long and it wouldn’t help me figure out what you were feeling. Mostly it would make me uncomfortable. However, I can learn to read a person’s tone of voice fairly quickly and get a lot of information from behavior and speech patterns.

  4. I stopped being able to participate *meaningfully* in graduate seminar courses after I was diagnosed and given advice on how to make eye contact with the instructor. I couldn’t even take notes in the undergraduate classes when I learned I was supposed to be trying to look normal instead of concentrating on the material.

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